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Should Patients Have the Option To Not Know Their DNA?
An anonymous reader writes "Genome sequencing is getting faster and cheaper every year. This article points out that in the not-too-distant future, a DNA test will be a common diagnostic tool for doctors. It's a good thing for figuring out what's wrong with you — but there will unintended consequences. The test will also return information about conditions and diseases you're likely to get, which will spur more frequent testing — which can be extremely uncomfortable and/or expensive — as well as more frequent worrying. Should people be able to opt-out of this knowledge? Even if they do, should the information go into the patient's medical record? It likely will, and then the next doctor may be in the difficult position of not knowing what she can discuss with the patient. A new decision from the American College of Medical Genetics has recommended giving patients the option of not having the information gathered at all. It can get more complicated, too: '[G]eneticists and bioethicists are already discussing scenarios where patients may approach such decisions more like a menu, saying they want to know about increased risk of heart disease but not cancer, for example.'"
I do not think there is a single law on the books that makes it illegal not to know something. All knowledge is op-out-able, as far as I am aware, no one is likely ever going to force you and everyone else to know something.
Troll is not a replacement for I disagree.
get that dang ol guvment out of my genomes thanks obama
I guess society is yet to put a version of that in law. This is the beginning of the end.
We should have socialized medicine so people can actually get treatment. Use the money you save putting the insurance industry out of work to pay for it.
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It's like doing a blood test in the 17th century and asking if you'd like to opt out on your WBC count !!
As Genome Wide Association Studies begin to crack more of the genomic puzzle, there will be tighter and tighter direct correlation between medicine types & doses and the effectiveness of those drugs. As this efficacy increases, it is highly likely that the best insurance coverage will be based on genomic information.
Determining precise doses of a drug and which drug should be used is going to make for much better quality of medicine. I would expect that in a couple of decades people are going to look at the drug practices of today and laugh that we are pretty much throwing darts at the drug dartboard and choosing whatever it lands on.
Opting out of specific tests will be like not wanting X-Rays to see if a bone is broken.
I'd rather you have to test me every single damn time at a horrendous expense and waste of money and time then store my DNA in electronic format.
Should people be able to opt-out of this knowledge?
If they couldn't, it would be interesting to know how many more people would avoid going to the doctor altogether.
Also interesting would be to know if the risk of getting a predicted illness would go up just from knowing about it.
Brave Sir Robin ran away. ("No!") Bravely ran away away. ("I didn't!")
Increased risk is only an indicator of what may happen and may not represent what eventuates. Why bother with this information if its only a possibility.
Can you sue if they get it wrong and you spend your life in fear of a disease that never comes?
If you know that you may be more likely to get cancer, then you can get tested more often and aggressively, increasing the chances that your cancer will be treatable.
I suppose on the other hand, if you worry so much thinking that you might get cancer you could die of a stress-induced heart attack or something.
Generally speaking though, forewarned is forearmed, and if the susceptible are more aggressively screened and treated, then it could well take away a lot of the "cancer is a death sentence" mentality that many people have.
I suppose it'll come down to personal decisions, but I sure wouldn't want to die of a condition that I was genetically predisposed toward, that was treatable and that I never got tested for because I was afraid the answer might be "yes".
Works ever time, right?
As asked, the question seems ludicrous; "If you don't want to know, don't ask." But I am sure there are some things (venereal diseases, for example) that doctors are required to inform their patients about. The more important question is, "What will the doctor tell anyone else?" Even if I wouldn't choose to tell others, I would certainly want to know what my insurance company (again, for example) was being told about me.
It certainly would have made Gattaca a shorter movie.
Jesus was all right but his disciples were thick and ordinary. -John Lennon
If you don't care about your health, just don't go to the doctor.
Parrot more cliches, and be sure to post your social security number, home address, mother's maiden name and date of birth here to Slashdot.
Security is an onion. Obscurity is a valid layer. Stop posting ignorant battlecries.
Some people HATE spoilers.
First, the summary is wrong in that DNA testing doesn't tell you what's wrong with you. If you have a cold, DNA testing won't tell you that.
What I don't understand is why you'll have your DNA tested often. Isn't once good enough until the tech advances or is it advancing significantly yearly?
Here's two important bits the summary left out:
The new recommendation amends earlier guidelines that called for doctors to screen for genes linked to 24 medical conditions, even if they are irrelevant to the ailment the patient is being tested for.
So testing was actually required before and now it's optional. I think that's good. Here's their counter argument:
Some doctors oppose the decision since they feel it will make it too easy to refuse potentially life-saving testing. “I worry that allowing this opt out will disproportionately impact the disenfranchised. It will become too easy for a lazy doctor just to say ‘ok, we’ll skip [this important testing],” says Robert Green, an associate professor of medicine at Harvard Medical School and a lead writer of the original ACMG recommendations. “Frightened patients, those less well-educated patients or perhaps those distracted by a child’s disease will be the ones that opt out,” he says.
Now you don't need to read the article (but it's not broken up onto multiple pages, so you might want to trigger a page hit as a way to say thanks).
Health insurance providers are going to fucking love this.
wasn't there a discovery that determined if you were likely to commit a crime? Or be serial killer or something like that?
How did that work out / what ever happened with it?
Society (in the US anyhow) already allows unrelated information to be used, for discrimination anyhow. I mean your automobile insurance costs is based on your credit history for gosh sakes. Why not allow insurance companies to reject you completely if they know you are going to get sick. I mean its not like insurance is for evening out costs or anything. Let the free market, and genetic fate determine your place/status in life.
slashdot troll = you make a compelling argument I do not like the implications of.
want's to remain ignorant, fine but the info should still be collected. It will be too valuable a tool.
The Kruger Dunning explains most post on
I think the general rule should be that the patient should decide about his/her own health.
I have met and heard about people that have had various conditions that have opted out on diagnosis, because they want to opt out on a certain treatment. People who have had cancer multiple times and would rather die from cancer the next time than suffer through radiation therapy and chemo, or people who have had an implanted automatic defibrillator that has provided a very painful experience.
If any kind of medical test is done, be it genetic or otherwise, then the test results should automatically only be available to the doctor who had requested the test. Permission to /portions of/ the test results should be available to other doctors only if the patient gives explicit permission.
"We mustn't be caught by surprise by our own advancing technology" -- Aldous Huxley
What's more important: People need help interpreting DNA and other tests. And doctors, too! We're no way near deriving the best individual course of action based on statistical information.
bickerdyke
It's actually a common phenomena and a strategy for managing bad news, be it about cancer or climate change. The problem arises when the person in denial does not move on to other mental states, but merely clings to denial "I don't have cancer", "there's no such thing as climate change" etc.
better make a genome-test to find out!
What I would be worried about is what happens if your insurance company finds out.
You have health insurance, you go get the test and discover that you have a high risk of heart disease or cancer.
That knowledge is now on your medical record. Your insurance company finds out about and drops your cover.
And no other company will write you a policy at a reasonable cost because your now a high risk.
Let truth prevail. That should be medicine to all problems.
If DNA information about a person shows he is having some weakness, then there are surely millions who are weaker like him. Medicine companies can directly reach those guys cheap. Public elected Govts. should show some spine and create well monitored regulatory mechanisms to protect public interests than corporate interests. They should introspect why public does not trust them and public should introspect whom they are electing.
... from ever seeing your genetic tests.
The way that clinical genomic/exomic sequencing is performed now is that a specific list of genes are chosen for a analysis before the analysis is performed. Mutations in other genes, that could well impact the health of the patient, are simply not reported to the clinician or even analysed. If a cancer specialist orders a patient's DNA to be sequenced for specific mutations that would guide the best choice of treatment for, say, lung cancer, how would this clinician deal with a report that included details of mutations that predispose the patient to, say, Parkison's disease? A disease clearly outside the clinician's area of expertise. The simple answer is that they could not. As such, clinical sequencing is performed for specific sets of genes relevant to a diagnosing a specific disease or disorder or choosing the best treatment. All other data is discarded. So what about a doctor's duty of care? Shouldn't they look at everything in the sequencing data? The answer, given to me by a clinical pathologist, is 'no', as this is not currently the case with standard tests based on older technologies: a blood sample sitting in a pathologist's fridge could very well be tested for every disease under the sun, not just what the doctor ordered, but this is simply not done.
One day, we may well all have our genomes sequenced at birth and every gene will be analysed to see which conditions were are predisposed to. But this widely-roaming analysis is not what is currently done and would first require tackling very big issues such as data storage and privacy. So, currently, incidental findings are not an issue, simply because they are not even observed.
the effects of stress in exacerbating and causing physical ailments is one that is well understood. many people naively believe that genes are the sole exclusive means by which illness may occur, despite there being innumerable counter-examples clearly demonstrating that this is false. that does not prevent people from *believing* that genetics is the sole exclusive cause of one particular illness or another, and *for such people*, that belief, when they are presented with such "quotes truth quotes", is quite likely to result in their death, due, ironically, to stress *triggering* the very illness that is merely latent rather than active within their genes.
here on slashdot we have people who, by and large, are capable of logical and rational thought. when presented with scientific issues, they apply rational bullshit filters on the topic of for example genetics. many of the opinions marked "insightful" on this article are a clear demonstration of that. however the general population has little understanding of genetics, and many many people simply do not think "rationally".
on the whole then, if it became a *legal requirement* to *force* people to listen to a doctor telling them words which, when that person heard them, were translated in their own minds due to their lack of knowledge and self-belief, that "they were basically dead already because of their genes", i would consider such people who pushed such laws through as being severely mentally ill as well as their actions being morally reprehensible.
answer: no. it is highly irresponsible to force absolutely everyone to listen to something that they are not fully equipped to comprehend.
1. Sequence everything
/certain/ question. So answer this specific question only but keep the data to answer potential other questions later.
2. Screen for the disease as requested, and only give this information to the doctor
3. Keep the data in case more questions are asked
4. You can thank me later
I don't see a problem. A patient undergoes a DNA test to answer a
MDs have demanded they only be told the results of the tests they request from blood samples, while the machines test each sample for all constituents. The results are masked at printout. This willful ignorance is a result of medical lawsuits, the MDs don't want to be shown results that might point out a flaw in the diagnosis.
I kind of doubt how useful genome sequencing will be for basic diagnostic medicine. I'm reminded of a scene in House where they're complaining about having to run a full body scan, because any time you scan anyone, you always find a dozen things "wrong" that require following up on, almost all of which are benign.
As a separate issue, considering the fact that the medical profession still can't decide whether fat is good for you or not, I have very low confidence in most assessment that X gene is linked to X condition.
All that is true, but in real world, knowing you will get ill can (and probably will) make a difference in how you can live your life.
Besides medical related issues, most insurance companies (in my country at least.. but if some tecnology like that pops out, surelly will start to pop out everywhere) require you state all medical conditions prior to the purchase of the insurance. And this insurance are mandatory for all kind of credit.
In the case of my country what they ask is for Known/Diagnosed medical conditions. So, knowing will give them legal basis to... basicaly abuse you. Making you some kind of type B, gattaca style, human being.
I do not think there is a single law on the books that makes it illegal not to know something. All knowledge is op-out-able, as far as I am aware, no one is likely ever going to force you and everyone else to know something.
Then why does my insurance company charge me an extra premium per month if I don't send them the results of my yearly physical? No, it's not force, but it damn well is coercion. I can afford the extra $400 a year. There are a lot of people who cannot.
What could go wrong with not being able to really opt-out of this testing (and by opt-out I mean be able to control who even knows whether you've had the test or not)?
"Mr Jones, our records indicate you have not done advanced screening for disposition to colon cancer, prostate cancer, diabetes, .......You represent a higher risk, $1000 will be added to your monthly premium."
"Lack of knowledge is lack of power."
(-1: Post disagrees with my already-settled worldview) is not a valid mod option.
With the shuttering of 23andme.com, forced by the FDA, we no longer have the ability to have our genes sequenced on our own prerogative.
Thanks federal government.
Slashdot's rate-of-post filter: Preventing you from posting too many great ideas at once.
There is no single good reason why people should be kept from their genomes. This is the corrupt new world we live in where corporations wants exclusive access to your DNA so they can charge you for every little thing you want to know about yourself. Do you have a horrible disease that will show up when you turn 50? That will be $4000.
I wonder why people aren't up in arms where they state "This article points out that in the not-too-distant future, a DNA test will be a common diagnostic tool for doctors". They better be asking my permission to do any of this. I don't want anyone taking or having my DNA sequenced. This is a MAJOR violation of my privacy. I don't think you should have to opt out of it, you should have to opt into it otherwise people will just say, you didn't opt out, you should have known. Even if they are only talking about using it to tell you what you could be predetermined to get.
The US is becoming far too invasive of ones privacy and very soon I think people are going to start fighting back however they can. And don't say, you have to put congressmen/senators in office that believe like you do. They are all bought and paid for and will do whatever the corporations want them to do and won't care about what the people want. The only way they care about the privacy invasions is when it happens to them.
should be 'more like a menu' complete with itemized pricing for each course of action. Sequenced genome or otherwise.
Every time I'm forced to interface with the medical care system in the U.S. I'm amazed at how the SOP seems to be for doctors and staff to basically make decisions regardless of cost, present their preferred course as fact, and run up all sorts of (often unnecessary testing), almost never consulting the patient with respect to alternative methods/courses of action. Cost is usually not part of the conversation, they basically do what they want and leave you to experience the shock of an astronomical bill from the safe distance of the billing desk or, better yet, at home. In no other industry is it commonly expected of the customer to blindly hand over a blank check in this manner.
Alter malpractice laws to enable patients a more active/involved role in their own treatment. tell them what stuff will cost.
Until this happens, get answers out of doctors and medical staff. They're just consultants to your health after all, and while you're in the treatment room they work for you. Don't allow yourself to be handled like a meat bag of profit. /rantover/
You may not get to see your DNA even if you ask. Biomed companies are claiming patents against DNA strands that have medical applications. So if your DNA has some medical use you may not get a chance to see it without licensing from the company that holds the patent.
Wouldn't the question really be should you have the test at all? A patient has to give consent for tests to be performed, you can just say no.
If you are really afraid of learning things, what's the point of having others know the results and not you?
There's also this law requiring Informed Consent. A patient must be advised about any treatment, the reasons for, and possible consequences. You also have to give consent as to who can see that information.
It's unethical for a doctor to withhold information from a patient, even when a patient doesn't want to hear it. And it would be impossible to treat without them understanding. If someone is intelligent enough to opt-out they are certainly intelligent enough to be given information about themselves for their own best interest, good or bad. Patients should not diagnose themselves, and you can't diagnose without information, and if you withhold information from that diagnosis, just like any scientific research, you may as well just change the data that you do want to use, the result is just as invalid.
Also, unnecessary tests are only unnecessary in hindsight when they don't find any problem, and aren't really unnecessary at all because they were able to rule out a possible condition which lets the doctor focus on other things that it could be.
I tried to get a blood test for the things I wanted to know, I was denied!
The place taking my blood And My Money Refused me!
"We will Only test for things the Doctor asks for"
My Money, My Blood but Not my Choice?! {that is how it is now.
If the doctor requests the test you won't even be told, they just Do it To you!
That is one reason I stay way from ALL of the "white coats"